Front and Center

Yeah, that’s our Patty V in the back of that group pic of Pancreatic Cancer Survivors…130 in all that showed up for Pancreatic Cancer Advocacy Day, can you imagine? She’s ready to be front and center tomorrow as we visit our legislators…we have scheduled meetings with Sen. Bill Nelson and Sen. Marco Rubio and Congressman Vern Buchanan. There are 600 of us in all at this conference, and we represent all 50 states. Each one of us will have the opportunity to meet our own U.S.senators and U.S. congressmen…the folks from Idaho, the folks from North Dakota, and so on…The Pancreatic Cancer Action Network folks trained us today on important opinion points that will hopefully influence the lawmakers to vote to increase funding of PANCAN research. By far the most inspirational moment of the day was the moment that all the Pancreatic Cancer Survivors attending the conference walked onto the stage and were warmly applauded and cheered by the rest of us!

Jean’s old friend Lynn and Lynn’s husband, Bob, joined us for the conference. Lynn is herself a 3 year PanCan Survivor…and Gary (in the pic on the right) was terrifically proud of his wife’s battle with the disease…she’s pictured here and is an eight year survivor. We heard panel discussions by scientists and pharmaceutical execs

and were particularly impressed by Dr. Norman Shapeless, Director of the National Cancer Institute. He was wonderfully informed about the exciting advancements being made in Pancreatic Cancer therapy and early detection and very eager to support young investigators/scientists to foster continued forward progress on the disease.

Later the six of us attended a break out

session on “How to tell your story” in preparation for our meetings with the senators and congressmen tomorrow. We were encouraged to prepare a “thirty second story” and a “two minute story” as we’ll be part of larger groups possibly. Apparently our Florida contingent of contituents numbers about twenty-five so we’re likely to only have a few minutes with the lawmakers, and the survivors among us will probably have more impact and therefore will have more time…

We were asked to practice our “stories” and Patty shared hers with us:

Patty’s StoryMy name is Patty Virgilio and I’m from Bradenton, FL. Today is a great day! I’m a wife, mother, sister, daughter and friend. I could be bitter, I could be home sitting on my couch wondering why this happened. I could be waiting to die….but I expect more of myself. I’ve heard “you have breast cancer”, “you have thyroid cancer” and “you have Pancreatic cancer” I’ve been battling Pancan for 5 1/2 years with no remission and enough is enough. Pancreatic cancer is the nastiest cancer and I’ve fought for 5 1/2 years to live, and try to enjoy every aspect of my life. I don’t want to die. Today I fight for better funding so my 5 1/2 year battle may take others much less time to put this behind them and get back to enjoying life and helping others realize that they can make a difference. My fight continues, the treatments, the vomiting…..it hasn’t ended and I need it to end with better treatment!I’ve fought with radiation, surgery and approximately 70 rounds of chemo in 5 1/2 years. I’ve fought to enjoy an ‘empty nest’ with my husband. I’ve fought to see my daughters get married, my son graduate from high school and head off to college, I might even get to meet my first grandchild in October! Every aspect of my life has changed. In spite of what PanCan has done TO me, it’s done a lot FOR me. I now realize what matters and what doesn’t really matter. My family and friends who rally around me every day matter. Things are well defined…..Funding matters. My parents do what they can. Through an annual golf tournament, my parents have raised a million dollars in 12 years. They have donated it all to cancer research. But the private sector is only responsible for 20% of funding. 80% of the funding comes from the federal government which is why we’re asking you to get on board and give me and so many others like me, a chance at the future we are fighting for and deserve. Enough is enough, make today the day that I can go home and tell my family and friends that you want to see me survive and get the best possible treatment through the best possible research! Thank you!

She will share this story and hope to impact the battle against this terrible disease in yet another way…by bringing more resources to fight the fight. Let’s bring this disease to the front and center and shine a very harsh bright light on it. It’s time.